Program
Theme
Bioethics and Paediatrics: Future development and challenges
Program
Children are not miniature adults. Childhood is a time with its own characteristics and therefore with its own needs, and this fact is also applied in the field of Bioethics. Childhood has been considered as an age of vulnerability and protection, but overprotection can lead to deprotection. Some areas in ethics, such as research (e.g., good clinical practice, risk-based approach, etc.) or as clinics (e.g., oncology, major surgery, transplantation, robotics, nanotechnology, etc.) require an specific paediatric approach.
The participation of children and adolescents in healthcare processes and research decisions is a new challenge. It requires not only a change of attitudes towards minors, but also acquiring knowledge and skills to be able to develop shared decision-making and information processes. Children are not only our future, they are also our present.
That's why the XV Annual Conference of the International Society for Clinical Bioethics will discuss about Bioethics and Paediatrics under the topic Bioethics and Pediatrics: Future development and challenges. The XV Annual Conference will feature keynote lectures from experts, parallel sessions and poster presentations, focusing the attention in the following topics:
Global bioethics
- Bios and ethics
Clinical practice and research in paediatrics
- Good clinical practice, risk-based approach, and ethics in paediatrics
- Clinical trials and paediatrics
- Paediatric oncology
- Paediatric major surgery (e.g., gender reassignment surgery, transplantation)
- New technologies, robotics, and nanotechnology in paediatrics
- Paediatric research in Europe
Anthropological, social, and legal considerations in paediatrics
- Children immigration in 21th century
- Anthropological and social research in children and adolescents
- Data collection and data protection in paediatrics
- Informed consent and decision making process in children and adolescents
Keynote Speakers:
KIDS Barcelona (Round Table)
The project KIDS Barcelona is part of the global project "Kids and Families Impacting Disease Through Science (KIDS)" within the International Children's Advisory Network (ICAN).
The project consists of a group of children and teenagers who act as a Scientific Council in SJD Barcelona Children's Hospital (HSJD). They are involved in the processes of comprehension, communication and improvement of the medical innovation's methods that impact children and teenagers, ensuring, in this way, the voice of the children and their families within the medicine, research and innovation.
The group KIDS Barcelona was created in 2015. Nowadays, it consists of 16 teenagers, aged 12 to 17 years, who have been trained in the four main areas of the project: Biomedicine, Research, Innovation and Clinical trials. The trainers were the professionals and partners of the HSJD, who were able to share their experience and expertise with everyone.
The project KIDS Barcelona seeks to answer to the following needs and goals:
- To teach and defend medicine, research and innovation that improves children's health and treatment, by placing young people in the center of our field of work.
- To promote a consulting process in the hospital, by including teenagers' voice and opinion in all the research projects that impacts them.
- To involve teenagers in the detection of unfulfilled pediatric needs.
- To plan and perform, from the pediatric perspective, all the processes that take action in the development of a clinical trial (e.g. assent document).
KIDS groups are also entitled as Young Persons'
Advisory Groups (YPAG) and are acknowledged internationally by the
regulators as well as by the pharmaceutical industry, recognized as a youth
group trained and empowered by a research centre.
Joana Claverol, MSc (Lecture)
Joana Claverol studied Biology at the Universitat Autònoma de Barcelona (UAB) and holds a master's degree in Clinical Trials Monitoring (UAB) and a master's degree in Pharmaceutical Marketing (Pompeu Fabra University).
Since 2012, she is Clinical Research Unit Manager at SJD Barcelona Children's Hospital (Sant Joan de Déu Research Foundation) and Director of the Clinical Research Unit at SJD Barcelona Children's Hospital.
Her many years of work in medical departments of pharmaceutical industries have provided her with great experience in affiliate Medical Department, Clinical Development and Medical Affairs; wide experience on clinical study management; deep knowledge of commercialization and business practices; knowledge of pharmaceutical product development, product lifecycle and commercialization process with advanced understanding of Clinical Operations, Commercial, Marketing, Regulatory, and Medical Affairs functions; therapeutic area and products expertise; cross-functional teams and teamwork fostering; and finance and budgeting experience.
Mark A. Turner, MD (Lecture)
Department of Women's and Children's Health, Institute of Translational Medicine, University of Liverpool, Liverpool, United Kingdom, and Chair of the European Network of Paediatric Research at European Medicine Agency
Mark Turner is a Neonatologist and obtained a PhD in Medicine with a study on Placental Physiology. He is currently Reader in Neonatology (Clinical) at the University of Liverpool and Honorary Consultant Neonatologist at Liverpool Women's Hospital (United Kingdom).
His Research Interests are driven by clinical practice and centre on Early Phase (exploratory) drug development in neonates and young infants; Medicines Safety in neonates and older children; and Research infrastructures. He is author or co-author of more than 150 publications about drug development and safety in children and also about other subjects on Obstetrics, Neonatology and Paediatrics.
He works to develop efficient medicines research infrastructure in Europe and globally as Chair of the European Network for Paediatric Research at the European Medicines Agency (EnprEMA), co-Director of the International Neonatal Consortium and as co-Scientific Coordinator of the IMI2-fundend c4c project: Collaborative Network for European Clinical Trials 4 Children.
His approach to research ethics is informed by extensive work as a broker between families, industry, regulators and clinicians.
Hans-Martin Sass, PhD (Lecture)
Hans-Martin Sass is a bioethicist, senior Research Scholar Emeritus at the Kennedy Institute of Ethics, Georgetown University, Washington DC, United States of America, professor of Philosophy Emeritus at the Ruhr University, Bochum, Germany, and honorary Professor at the Peking Union Medical College, Beijing, China.
He holds academic positions at People's University of China and Peking Union Medical College (Beijing, China), and at the Bochum Centre for Medical Ethics (Bochum, Germany), which he helped found in 1985. Professor Sass is editor of the Ethik in der Praxis / Practical Ethics series at Lit Verlag (Münster, Germany) and the Medizinethische Materialien (Bochum) and the author of over 250 articles and books. He was a member of the International Bioethics Committee of UNESCO and is a member of many international and national advisory bodies and to philosophical and bioethical journals.
An expert in European continental philosophy, Dr Sass has published widely on Hegel, Marx, 19th- and 20th-century German philosophy, and liberal political theory. During his research, teaching, and consulting in cultural risk assessment, research ethics, clinical ethics, and public-health ethics, he developed cross-cultural perspectives in the major fields of bioethics (based on concepts of personal and professional responsibility), regulated markets, mutual trust, and partnership ethics.
Montserrat Esquerda, PhD (Lecture)
Montse Esquerda is a Paediatrician and holds a degree on Psychology. She obtained a PhD in Medicine (Universitat Autònoma de Barcelona) with a study on Focal segmental glomerulosclerosis. She has also a master degree in Bioethics and Law (University of Barcelona).Her Research Interests comprise Ethical criteria for the distribution of resources; moral development, empathy and burnout in medical and health students and health professionals; health decision in children and adolescents; and ethical aspects at the end of life. Dr Esquerda is the author or co-author of numerous publications in these fields.
She is currently General Director of the Borja Institute of Bioethics-Ramon Llull University, and works as a Paediatric Psychiatrist at Sant Joan de Déu child and adolescent mental health center at Lleida (Catalonia, Spain). Dr Esquerda is also Associate professor of Bioethics at the University of Lleida and president of the Deontologic Comission of the Official College of Physicians of Lleida, and she participates as a member of several advisory commissions in the field of Bioethics.